Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision
making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question from our readers and the question was
My Dad is Less Responsive in ICU. Is He Being Sedated By The Medication that the ICU Team Is Giving Him?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Marg as part of my 1:1 consulting and advocacy service! Marg is
angered by the way the ICU team is handling her brother’s case in ICU and she asks if the ICU team is allowing her brother to die by giving him heavy sedation.
Is the ICU Team Allowing My Brother to Die by Giving Him Heavy Sedation? Help!
Hi Patrik,
My sister and I have not made a decision yet on your assistance. We can see signs of brain injury and we can see brief signs of lucidity.
The doctor has knocked back our request, twice, for a review of Rob using the same measurement criteria that determined he was terminal in ICU. But of course they are closing ranks and telling us this is just a wave or brief rally and that he will die. The review was performed by an oncology doctor who was just backing her colleagues.
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I fed him water two cups over 11 hours via sponge in his mouth today. He asked for it. And every time I offered it, he said yes. He’s so thirsty!
We decided to ask pain meds be taken away so we could see how awake he gets. It’s brief and he tends to parrot us but reversed. I said “you can’t access the words” he’d reply, “I can’t access the words” and repeat that like an echo.
He remembers my name but not my sister’s name although he could tell us the region in Russia she was born in. He has said things like “you need to help me” but in Russian, his first language without prompting. But was unable to answer many questions in complete sentences or even at all.
But then would come out with his own sentence “I am a car wreck” but said “car wreck”. He can move his arms to his face, make a fist on request. But he would zone out and fall asleep between these things and didn’t move his legs more than an inch. He coughs but weakly, spits out phlegm if I offer a tissue to his lips. He was able to tell us his head hurt.
Anyway, not wanting you to diagnose him, we are just deciding, if this is what he is now, very brain injured, do we want to push for him to stay alive or not. Can we live with doctors allowing him to die from dehydration just masked with heavy sedation to prevent his suffering from being seen? Is him dying that
way humane or not? These are questions we need to ask ourselves and our family.
We are waiting until tomorrow to see how he is. The infection may have worsened his condition, or not.
We may just utilize you to confirm the doctors’ decisions as most appropriate for quality of life. We know he would not want to live as a zombie like he is. If we do agree to let him die, is there a more humane way than dehydration masked in pain meds and sedatives?
Thank you kindly for your video. It’s great to put a face to your name.
We will be in touch tomorrow and hope that you are free then.
Thank you,
Marg
P.S. Excuse my rambling, I have slept only 2 hours each night for the last two nights.
Also thank you for offering such a service to families. Whether we use you or not, what you do is fantastic.
Hello Marg,
Thank you Marg.
Let me know if you have any questions regarding the consulting and advocacy options.
I understand the complexity of the situation and I know I can help you fast, whether you want me to help your brother die humanely or whether you’re after giving him a second chance.
Kind regards
Patrik
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Hello Patrik,
Doctor assessed him this morning and he was coherent and passed cognitive tests. She decided to move him from palliative care back to infectious diseases ward.
He has memory loss and some fake memories but he’s making sense when he talks.
He will likely be going back on antibiotics today.
Thank you for being there for us. Knowing we had you as a resource I could utilize gave me the confidence to stand my ground and tell the Doctors they needed to reassess or escalate!
We may still need you, so I may be in touch. But thank you so much!
Regards,
Marg
Hello Marg,
You’re welcome Marg.
I’m very pleased to hear that there’s progress.
Let me know if you need help!
Kind Regards
Patrik
Hi Patrik,
So update with my brother is that we had him successfully moved from palliative to the infectious diseases ward. He had been moved from ICU to palliative care on the evening on the 31st of September. He was placed back on IV fluids on the 4th of October, meaning he was without fluids and without antibiotics for at least 3 days.
Sorry, to back track, he self-admitted to St Kaira’s Hospital on the 19th of September, very unwell with Staphylococcus infection to the back of his hand and his upper chest. They operated on both but he then declined cognitively.
I do not know the order of events but it was discovered he had a staphylococcus abscess on his brain and down his spine and a procedure was done on his head to relieve that pressure. He allegedly showed no response in ICU when taken off life support.
He did not have a next of kin listed so the doctor sent him to palliative care on the evening of the 31st of September. Our family only found about this on the night of the 31st and flew the morning of the 1st of October. On the 2nd of October we believed he had improved. That’s when I had to advocate for a reassessment, etc.
When back in ID unit, Dr. Eborde, who had been treating him prior to him going to ICU told me the best course of treatment for this illness was a minimum 6 weeks on IV antibiotics then months of oral antibiotics. He was on IV flucloxacillin and linezolid.
At some point the linezolid was changed to oral but flucloxacillin remained via IV. I read online that this was also the best course of action for staphylococcus abscesses in the spine.
Whilst here he was initially very out of it, at times conversing fluidly and quite lucid, at times he was withdrawn and quiet or nonsensical and delusional. One night he pulled out his own catheter and long term upper arm cannula. This long term cannula was not replaced. This bothered me as the doctor had said every new cannula increases the risk of the staphylococcus infection going back into his blood.
He couldn’t lift his legs for the first few days nor feed himself. I fed him daily for two weeks. Every day he got better and better. His delusions stopped about a week ago. His memory improved rapidly. His ability to retain new information increased dramatically.
He took his first long walk to the end of the ward and back on the 13th of October. I feel my old brother is back, and this is not wishful thinking. Today he was assessed by occupational therapist cognitively and functionally and she advised that he is well enough to care for himself, so NDIS not needed.
But his behavior in hospital, when I am not here is quite terrible. My brother has borderline personality disorder as well as a bad temper. He tends to lash out and be verbally aggressive when he is in pain or told something he doesn’t want to hear. Apparently he has “wriggly veins” which allegedly move when they try to insert a new cannula.
This means nurse after nurse fail inserting them and leaves him yelling at them like it is their fault. I tell him not to do this, but his temper has more control over him than my calming voice at that time. This morning, when I wasn’t here, he called his doctor “bad doctor” because she denied his request to go outside for a cigarette.
A new cannula was inserted last night but came out in the morning as he was itchy.
I believe he is reacting to a med as this itchiness comes on every night.
This afternoon this same doctor came and told us that she spoke to her senior doctors and they decided that moving him to oral antibiotics now was a good idea with a view to release him this Friday. I asked her how long he had been on it, she said 5.5 weeks.
I pointed out there was at least 4 days without IV treatment when he was in palliative care as well as several whole days in this unit when he was waiting for another cannula. She agreed that with that in mind it was not a full 5 weeks yet.
She admitted, without directly admitting it, that his behavior has shaped doctor’s decisions on his treatment. Basically he has been placed in the difficult to treat basket. I asked her if there was any new information, such as blood tests and she said no, he allegedly refused the
phlebotomist taking blood this morning. Although I note in his file he went a whole week between blood tests last week!
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I have attached the most recent information doctors have on his condition.
What I would like to know is, is it safe or recommendable to move him to oral antibiotics alone at this stage? I have the name of the new oral one they wish to move him to in place of flucloxacillin, I will forward the name of that soon.
His inflammation marker did not go down further last week (tiny increase). Is this a concern? The doctor has told me it will take months to get down under 5 (when he was in ICU it was over 300 and after coming back to ID, it was 175!). Last blood test said it is 26.
MRI for 15/10 shows abscess still on base of spine and in his head. Doctor has said she will not order a new MRI before releasing him and said this is something that should be done in 3 months. Is this correct or normal treatment?
I am attaching photos of his most up to date blood tests and MRI. Can you please review these?
Thank you for reading and calling me later tonight. Appreciate your help!
Regards,
Marg
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Hello Patrik,
I also need to add, when I spoke to the doctor this afternoon and expressed my concerns about him not yet having the full 6 weeks IV treatment, she said she will have a night doctor put in a new cannulas flucloxacillin restarted.
She said that at a certain point IV antibiotics are no longer better than oral and she believes that is occurring now with my brother. If it is, why did she agree to put another cannula in?
As I was writing this the after hours, doctor came in, inserted a new cannula and took bloods for pathology. IV for Flucloxacillin will continue tonight as soon as the nurse makes up a new bag.
I was just going over my notes. The oral antibiotic they wish to put him on in place of IV flucloxacillin is Bactrim. This will be as well as Linezolid.
Sorry for the double email. Speak to you later!
Thanks,
Marg.
